Rare Disease Report

MMA Fighter Battling Rare Disease

NOVEMBER 27, 2016
James Radke
Those who know me know that I am a big mixed martial arts (MMA) fan. Huge fan.

MMA is a rare but growing sport that requires one person to persevere through hard work and sacrifice while relying on a team of individuals working behind the scenes to keep the fighter as healthy as possible for their next battle.

Sound familiar?
So, it came as no surprise to learn that one MMA fighter is battling a rare disease and that battle is making him stronger.

UFC fighter Joe Ellenberger began fighting in MMA while at the University of Nebraska at Kearney where he was studying industrial distribution and representing the University in NCAA Wresting. On the day of his graduation in 2008, he skipped the ceremony to enter his first Victory Fighting Championships fight (he won).
By the summer of 2009, the 24-year-old had a fighting record of 10-0. But in the fall of that year, his health began to bother him and subsequent tests revealed that he had paroxysmal nocturnal hemoglobinuria (PNH).
PNH is an acquired rare disorder characterized the complement system destructing red blood cells to early. Red blood cells are missing the PIG-A gene that allows glycosyl-phosphatidylinositol (GPI) to help certain proteins stick to cells. PNH is the only hemolytic anemia caused by an acquired (rather than inherited) intrinsic defect in the cell membrane. If left untreated, most will die of the disease within a decade of being diagnosed.
Fortunately, Soliris (eculizumab) is available to treat the condition and according to Joe, “With insurance helping pay the FDA approved drug, and the National Organization for Rare Disorders (NORD), Joe was and is able to receive treatment.”
Since then, Joe has married, received a Masters of Arts in Education in Sports Administration and continues to train and fight in VFC and UFC matches. As a pro fighter, his record is 15-2 with his last fight being in December 2014 in a TKO loss to Brian Barderena.
 Local NBC News affiliate in Joel’s hometown, Omaha, NE provided a news feature on the fighter’s condition. It is shown below.

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